Thank you for your advocacy Dr. Shepherd, but I don't see how this will have much effect on policy...I sent this letter to the Times, apparently it wasn't well-written or topical enough to be published, but I think it outlines the problems for patients like me reasonably well:

Sir, I am one of a significant number of patients who have been written off by the NHS. I have been unemployed since I fell ill in 2013. I would like to work and to contribute to this society, but at present my condition makes this very difficult. If I recover to any substantial extent, I would like to do a Master's in Chinese, and then teach this language to students in this country. One of the first things that I have to consider when planning for the future is how I am going to cover the cost of my future health care. I can not rely on being a British citizen and being eligible for health care on the NHS since I have not been able to rely on them so far.
At this point I should say a little about my condition. I have a chronic infection caused by a organism that is present everywhere in the world, and which occasionally makes the news with a new outbreak (as there was in New Zealand in 2014). The name of the organism is Yersinia Enterocolitica. In some patients the infection resolves quickly, without the need for antibiotics; in others it lasts for years. Reactive Arthritis and liver disease are the two most prominent manifestations of chronic Yersiniosis. I have raised liver enzymes, and also subclinical enthesitis, so I am naturally concerned when I read that the mortality rate in cases of serious liver disease is around 50%, or that in some cases Reactive Arthritis can develop into inflammatory axial arthritis. I have raised these concerns with my GP and he recognises them as valid, but tells me that there is little he can do for me. I recently contacted one of the few Yersinia researchers in the country to confirm that this was indeed the case, and was surprised to hear that they did not know of anyone who treats this disease in the UK.
So my dilemma, if I recover to the point where I can work again, is this: should I work in this country and pay taxes, some of which go to a health system that seems unequipped to help me? Or should I seek both health care (as I am currently doing at my own expense) and a future career abroad, where my national insurance contributions might actually go towards paying for my health care? I am not the only one who has been presented with such a dilemma. The problem for patients like myself is that there is little prospect of the situation changing in the future. This is due to two factors: 1.), in a socialist healthcare system such as the NHS, there is only so much money to go round, and decisions have to be made about where this money is best spent, which inevitably results in little or no funding for relatively uncommon diseases such as mine ; 2.) because of the first-past-the-post system, there is little chance this country will adopt a healthcare system like that of other European countries, since all the main parties (those that actually stand a chance of being asked to from a Government) have declared that they are for the status quo. i.e. keeping the NHS. If this is what the majority of British voters want, then this is what should happen; it is not fair though that people who do not want this should not have any plausible candidates to represent them.
This is only partly a result of the current electoral system; it is also a result of the way the media covers this issue. When details were released of a UKIP plan to change the healthcare system in this country, the party received such negative coverage in the media in the ensuing days that they quickly came out with a statement reaffirming their commitment to the status quo. In this way, debate is quelled and dissenting voices hushed. This is not how a representative democracy is supposed to function, and it leaves people like me with only one option, that of voting with our feet.

P.S. I deliberately avoided mentioning ME for two reasons. The first is that, even though I have many of the symptoms, I have not received a diagnosis of ME (rather one of the Chronic Yersiniosis). The second reason is that I did not want any response to focus on the problems with diagnosing and treating diseases like ME, but rather on the problems with the systems (health and electoral).

Letters about ME/CFS to parliamentary candidates in the UK general election clearly isn't going to create a major shift in the government position on benefits, research, services etc.

But it's like everything that individuals and patient support charities do, or ought to be doing - we have to keep making our points to the DoH, DWP, MRC, NICE etc etc in the knowledge that every so often you will make another step forward. If you just give up and do nothing, then nothing at all will happen.

If you look at the five areas I refer to I would argue that constant campaigning has had positive effects - even though they are nowhere near what is needed.

For example, all the work being done by the Fluctuating Conditions Group (I am the member for ME/CFS) and Professor Malcolm Harrington on changes to the WCA descriptors has been mirrored with a very significant incrrease in the numbers being placed in the Support Group and a very significant reduction in the numbers being found fit for work.

In relation to research, the MRC Expert Group on ME/CFS research (which I was also a member of) did change attitudes at the MRC towards biomedical research, resulted in £1.5 million of ring fenced funding for biomedical research, and a highlight notice referring to neuroinflammation.

And our meeting with Professor Mark Baker from NICE resulted in an admission that the NICE guideline (currently sitting in the static list) does need revising.

I've been emailing my local MP about loads of things recently.
All I'm getting back from him is;
"I will reply later when I have had time to study the issues you raise."
He doesn't bother replying after that.

But, he's nuLabour, on a hiding to loosing his seat to the SNP,
I think he's just looking to try to consolidate and secure his own position in the future at the moment - he'll be looking for lucrative folk to be cuddling up to.

I have two different sheets, an initial one, and a follow-up one when they produce an anodyne answer. You'll find the first at http://evaluatingpace.phoenixrising.me/givemethemoney.html, and the second one I can email to you if you PM me with your email address. I think the key part to stress is that 3 times parliament has made it clear that it expects the MRC to encourage, support and fund substantial studies into ME (2002 a Chief Medical Officer's Report: 2006 the Gibson Inquiry: 2010 Early Day Motion signed by 123 MPs). It is the latter that "forced" them into funding 5 small studies, but normally they just set up a committee, then wait for another general election and a fresh lot in. I suspect it could touch a nerve if MPs think that QUANGOs like the MRC just ignore them.

I'm trying to keep a list of all MPs contacted, so please let me know how you get on. Good luck!

I think the situation is different in Scotland, we have a different NHS system and we are not bound by NICE - although most gps use it as if we were.

We have our own guidelines on the diagnosis and "treatment" of ME, (management, really) but because of the influence from AfME and NICE, they got watered down and delayed and made more compatible with NICE - so gps here can choose to use NICE if they want to.
It's a mess, but I think the reality is that ME is at least officially better recognised here, but not on the ground or in the health service.

There are no ME centres in Scotland. The only "service" that exists is one nurse in Fife who does a bit of psychology. (And perhaps some psychiatry available at Astley Ainsley in Edinburgh? I'm not sure.)

I've never seen any "specialist", OT or even been offered advice by my gp.

I think the situation is different in Scotland, we have a different NHS system and we are not bound by NICE - although most gps use it as if we were.

Click to expand...

Yes, health is a devolved issue in Scotland, Wales and Northern Ireland.

Peggy-sue, suspected M.E. patients can get a referral to the Infectious Diseases Unit at the Edinburgh Western General. Edinburgh was on one of the centres that took part in the PACE trial.

However, if you've had a full work up for other conditions that cause fatigue such as coeliac disease and lupus etc, you're not missing out on anything. And, to be honest, if you have PEM, what's the point? Unless, of course, you're unlucky to have two diseases at the same time.

I think the situation is different in Scotland, we have a different NHS system and we are not bound by NICE - although most gps use it as if we were.

We have our own guidelines on the diagnosis and "treatment" of ME, (management, really) but because of the influence from AfME and NICE, they got watered down and delayed and made more compatible with NICE - so gps here can choose to use NICE if they want to.
It's a mess, but I think the reality is that ME is at least officially better recognised here, but not on the ground or in the health service.

There are no ME centres in Scotland. The only "service" that exists is one nurse in Fife who does a bit of psychology. (And perhaps some psychiatry available at Astley Ainsley in Edinburgh? I'm not sure.)

I've never seen any "specialist", OT or even been offered advice by my gp.

@Scarecrow, When I'm in Edinburgh, I carry a note around on my person.
It states that I should be left to die on the streets rather than be taken to the Western.
(I had a terrible, terrible experience there while they were busily ensuring it took a long time for my Dad to die in agony. And experienced abuse for having ME, as I was his carer.)

I've not had a "full work up", no, my gp believes NICE about not doing any testing.
In fact, he refuses point blank to give me a diagnosis. He doesn't think it matters that our gp-patient relationship is on a bad footing.
I fulfill all the right criteria, I get serious PEM, I got sick in a split second. Not a day or an hour or a minute - literally a split second.

I was crossing a road at the time. If I'd felt like that before I stepped off the pavement, I would not have stepped off the pavement. I was frightened I'd get run over because of not being able to make it to the other side.

No, I'm relieved that I haven't been sent for CBT or GET. I wouldn't bother going if I was referred.
I don't need to waste the nurse if Fife's time either.

I've learned all I need to know from other sufferers (you lot!) on places like PR, and from Dr Myhill's and Hummingbird's sites.

I think the MRC is not devolved since it seems to fund some Scottish universities. However, a large part of the medical research budget is for more applied research funded by the NHS which as you point out appears to be devolved.

I've been emailing my local MP about loads of things recently.
All I'm getting back from him is;
"I will reply later when I have had time to study the issues you raise."
He doesn't bother replying after that.

But, he's nuLabour, on a hiding to loosing his seat to the SNP,
I think he's just looking to try to consolidate and secure his own position in the future at the moment - he'll be looking for lucrative folk to be cuddling up to.

Click to expand...

Reply:

One of the key points being made in the MEA letter is that each UK parliamentary constituency probably has around 400 people with ME/CFS.

Add on partners, or parents of children with ME/CFS. and that makes around 800 people with an issue that for many of them will be at the top, or very near the top, of their concerns.

If you are an MP sitting on a slender majority, the fact that 800 people have an issue (i.e. ME/CFS) that is more important than the economy, NHS in general, immigration etc is something that should concentrate the mind.

But this can only be done if people with ME/CFS try to make this an election issue. That is why we felt it was worth preparing a letter that people can use and we hope that people will use this opportunity to back up the political campaigning we already do at Westminster via the APPG on ME and the Forward ME Group.

Incidentally, the Forward ME Group will be meeting the new 'Customer Services Manager' for Atos tomorrow at the House of Lords with the Countess of Mar. Maximus are taking over the contract to carry out DWP medical assessments from Atos in March. I will also be meeting Sue Marsh the following week with members of the DWP Fluctuating Conditions Group to discuss WCA.

I think one of the problems is the top-down approach you get with a socialist health care system. I think if we had health insurance instead there would be more chance that patients with ME would be able to get some kind of treatment. This would be heavily proscribed by the insurance companies, but they wouldn't be able to manage to completely write off ME patients, as the NHS have done.

But since no major party is suggesting reforming the health care system, I don't think my vote will make much difference in terms of significant changes in the way ME patients are treated.

Rather than, once again, placing the onus on patients, when are our GPs going to stand up and say:

"We have 250,000 sick people here but, since the NHS CFS clinics are not fit for purpose, we have nowhere to refer them to for treatment. The time has come for dedicated ME centres nationwide on a par with the best found outside of the UK."

In the words of Maya Angelou, "We do the best we can with what we know, and when we know better, we do better."

I would like to think that, in these enlightened days, our health professionals "know better" than they did. Their voice en masse would effect change far sooner than that of their patients.

Edinburgh, libdem. Former neighbour of mine although you wouldn't know it. He wasn't the sort to bother saying "hello" or give a nod to a neighbour in the street, no matter how familiar they became. He stared straight through you.
(sorry, can't seem to help stirring things today. )

I'm going to make an effort to at least get a letter posted and I'll ask family in another county to do the same, even if it does use up a few days worth of brain power. This is how we can get things DONE!